Adrenal Insufficiency, Autism, Disability Advocacy, feeding disorder, g-tube, Health, Medically Fragile, Parenting Advice, Rare Disease

When Your Medically Complex Child is Stared At and You Feel like a Side Show

When you are a mother, you are never on time for any event. There are so many things any parent needs to remember for their child. Do they have extra clothes, snacks, sippy cups, toys, or their favorite stuffed animal? Now imagine you have a child that has special needs and has more than just standard things you need to pack. There are families all over the country that are having to pack supplies for a feeding tube like extensions, syringes, pumps, feeding bags, Farrell bags, backpacks, gravity bags, and coolers for food. Other families are packing up their oxygen, vent and trach supplies. Others are packing up their wheelchairs and making sure that they have all the attachments, restraints and everything is working properly. Families are packing medications that need to be given throughout their day. If their children are incontinent, they are packing diapers, wipes and pads for their child to be changed. Their cars are full to the brim by the time they leave, and that is only the beginning of their day.

Getting out the door for these families takes a lot of time, energy and planning. Then there is the navigating of where they are going.

Are there places to change a diaper of a child older than three years old?

Where can they feed their child that has a feeding tube?

Are there ramps and automatic doors for those using wheel chairs?

Will there be enough space to unload the car in the handicap accessible parking?

Will the event have space for the family to move without the child being bumped, hit or hurt?

Accessibility isn’t a huge issue most families face in planning. Time is spent reviewing the area families intend to go, and planning is done to ensure that despite the child’s limitations they will still be able to have a fun family event.

Hours can go into the planning and preparation for the event for the parents. The biggest obstacle parents of children that are medically complex cannot be prepared for are the other people that are at the event. I say this with the complete respect for all humans, but there is this element of our children’s medical complexities that create a side show mentality to our lives. We move differently through crowds. Most of us carry bags for all the equipment, push wheelchairs, and our children often have tubes connected to them for breathing, eating, going to the bathroom, or for medications. Our kids are often overwhelmed, scared and frustrated that they can’t get to the event the same way the other kids around them are moving. If we are pushing chairs, people cut in front of us and bump our children with their arms and legs. When we are looking at displays at museums, the zoo or aquariums, other children will climb over the chair to get in front of our children. It is as though our children are no longer people but are objects in a chair without feelings.

As we move through crowds, there are stares, whispers and glares at our families. People point and we know they are talking about our children. Our kids are no longer a child at that moment. They are on display for all to see. When we need to take care of our child, our every movement is analyzed and stared at by complete strangers. Other children may approach us with wonderment in their eyes as they watch us tube feed our child, give them meds, give them breathing treatments or change their diapers. We try our best to be polite to people as they stare and as children ask us questions. However, there is a time when all of us lose it, and we just want privacy for our child and our family.

For most of us it is hard enough to get out the door, but then to have the grace and kindness to deal with the rudeness of strangers can put us over the edge. We can lash out, say things we don’t mean, or completely shut down when people approach our families. Many of us are bombarded with intrusive questions about what is wrong with our child:

What is their disease?
Why can’t they breathe?
Why can’t they eat?
Will they ever eat?
Why can’t they talk?
Do they know what we are saying?
Will they live a normal life?
What is their prognosis?
Why aren’t they potty trained?
What is wrong with them?
Why can’t they walk?
When will they walk?
What is their syndrome?
Did we know while pregnant they were sick?
Will they grow out of it?
How do we do it all?

Many of us try to be polite and answer the questions of the inquisitive strangers. However, I can guarantee you that many of us are seething on the inside. At the same time you are giving us the third degree, we would love to flip the script and give it right back to you. We’d love to ask you intrusive and private medical questions about you and your children. We also want to remind you that even though our child is in a chair, nonverbal, can’t eat or walk – that they still have ears and can hear you when you speak. We want to scream that our children are not for your amusement nor are they an item on display for you to analyze and discuss. These are kids that are growing up that have thoughts, feelings, and want the same things of any other child. As their parents, we want to be able to go to an event and not be a spectacle for others to watch, point or stare. We want our kids to have fun, laugh and create memories.

When we leave these events, we are often feel defeated, frustrated and sad that another fun family experience was ruined because our child was unable to be a kid. We are reminded how much of our lives are on display for the world to consume. Most of us crave the quietness of a normal family that can go to an event and just be left alone. These families aren’t stared at by strangers, bombarded with questions, and they can eat in peace. Our children leave feeling stressed, and sometimes ask us why people are always looking at them. They are reminded how they are different every time they step out the door, and their self-esteem is hit a little bit after each of these experiences. As parents, we remind them it is ok to be different, build them up, and cheer them on. However, our kids are smart, and they see how the world works, how people view them, and they know they are often viewed at as less than others.

In a world where we are pushing for more compassion, more inclusion and more acceptance, the biggest thing most in our society are missing is their reactions and interactions with individuals with disabilities. As parents, we want our children to grow and thrive despite their medical complexities, and we are desperate for other parents to partner with us and help raise their children to accept people that are different from them. The best way any parent can teach their child is to model the behavior they want their child to emulate. If you are a parent that is staring, gawking, bumping into people in wheelchairs, or asking intrusive questions to those people, your child is going to do the same thing. If you are rude to people with disabilities, your child is going to be rude to be rude to them too. If you treat a child or adult with a disability as a second class citizen, your child will do the same. The process starts with the parent to model the behavior and teach their child there will be many different people in the world. All of those people have thoughts, feelings and emotions, and all of them deserve respect.

Our children need you to help them feel good about who they are, and we are relying on you to be our partners in making sure our children grow up with self-esteem and self-worth. We don’t want our kids to feel like they are spectacles, and we don’t want them to be ashamed for their differences. None of them can control their position in life, their ability, their DNA or the diseases that ravage their bodies. They can control their attitude, their happiness and their reactions to the world around them. If their experiences with the general public are negative, it will be tough for them to develop a sense of self-worth.

Please be considerate and compassionate to individuals with disabilities. When you see someone in a wheelchair, try not to stand in their way, bump into them, climb over them, or stare at them. If you see a child with a feeding tube, trach, oxygen, or other medical equipment, please don’t stare at them. Also, please don’t ask questions to their caregivers about them because they can hear you and they do understand. Instead of viewing this person as an object, please consider them as a human. Interact with them and their families. Say hi to them, smile at them, and ask them how their day is going. Treat them the same way you would treat any stranger you would meet. No one would go up to a healthy stranger and ask them about their medical background, so please don’t ask families these questions.

We know you are curious, but our children’s lives and health are their private business. They are not required to tell anyone about their medical background simply because their disability is more visible. Our kids are people, and they need you to treat them like a person and not a disease. Please remember our families depend on your empathy, compassion and kindness for us to raise our kids with positive feelings about their differences. We spend so much extra time to get out of the house, and we need those at the events to treat us respectfully and our children as people instead of objects. Please help us by being a part of the experience. You are welcome to laugh with us, talk with us, eat with us, and play with us. We are families just like yours, and we want to leave any event knowing all of our kids created memories that will last a lifetime.

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